Dementia-Friendly Initiatives for Individuals Living with Dementia, Care Partners, and Communities

Abstract:

Many existing affordable programs for individuals living with dementia are under-used. This article outlines the history of Dementia-Friendly America and efforts in states to address the needs of individuals living with dementia and their care partners within an Age-Friendly framework. It reviews existing state programs that focus on gaps in services for these sub-populations, the need to communicate about available, affordable programs and services, and public health initiatives to fund community-based supports for people living with dementia and their care partners. It addresses inclusivity, anti-ageism, and equity, as well as how to address quality outcomes in each of those areas.

Key Words:

dementia, dementia-friendly, age-friendly, 4Ms, Alzheimer’s

The number of adults in the United States living with dementia and related disorders is estimated to surpass 6.5 million and continues to grow (Alzheimer's Association, 2022). The World Health Organization (WHO) defines dementia as a syndrome, commonly chronic or progressive, that impairs cognitive function beyond what is expected with aging. Dementia affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment (World Health Organization, 2021).

While dementia is not an inevitable consequence of aging, more than 75% of people living with dementia (PLWD) are ages 65 and older. More women than men are living with this condition. Four million of the more than 6 million PWLD in the United States are women. Dementia also has varying prevalence in race and ethnic groups; both older non-Hispanic Black and Hispanic Americans are disproportionately more likely than older White Americans to develop dementia symptoms (Alzheimer's Association, 2022).

Despite the available information on dementia, a majority of cases go undiagnosed (Jacobsen, Thunell, & Zissimopoulos, 2020). Lack of time, training, and tools for primary care providers as well as the stigma and fear associated with cognitive impairment hinder the condition’s diagnosis, leading to an underestimation of dementia prevalence in the United States.

Call to Action

Creating and sustaining an effective system of care for PLWD and their care partners is vital for all of us. This is a public health issue that affects everyone in every community. It requires thoughtful planning and resources so older adults with cognitive challenges may choose to continue living in their homes and neighborhoods. Many PLWD move to a nursing home or other group home setting because there are inadequate community-based services and supports in their city or town. We can change that paradigm, and we must act now to build and test a new ecosystem, with systems of care and support for PLWD, their care partners, and communities.

What is an Age-Friendly Health System or Community or an Age-Friendly Ecosystem?

Multiple sectors have identified and implemented strategies to promote Age-Friendly frameworks, but their efforts have mainly advanced in siloes. A similar approach seems to be happening in the Dementia Friendly (DF) movement. DF communities are being actively pursued at state and local levels (Massachusetts State Plan on Alzheimer’s Disease and Related Dementias, 2018), but often in a disconnected fashion.

In Pursuit of Shared Characteristics

An Age-Friendly Ecosystem (AFE) (Fulmer et al., 2020; Wetle, 2020) is a comprehensive, collectively built, ever-expanding platform with the goal of improving quality of life for older adults around the world through enhanced, collaborative impact. Kania & Kramer (2011) describe five conditions to achieve collective impact when coordinating efforts across sectors: a common agenda, shared measurement systems, mutually reinforcing activities, and continuous communication. A systematic approach was taken to look across age-friendly frameworks to ascertain what they have in common and to highlight shared characteristics. More than 50 leaders from more than 25 organizations and 6 countries who are working to advance age-friendly initiatives in public health, health systems, community, academia, and the employment sector worked together to find ways of describing a cross-sector Age-Friendly Ecosystem (Dash et al., Under Review). From this work emerged six shared characteristics of an age-friendly ecosystem:

Responsive: responds to the values and preferences of older adults

Healthful: promotes the health, safety, and optimal functioning of older adults

Equitable: includes programs and services that meet the needs of, and reaches all older adults

Engaging: promotes inclusion and involvement in activities that are important to older adults and that sometimes benefit society

Active: sectors implement programs, practices, and policies that optimize older adult mobility, sense of freedom, and independence

Respectful: individuals, institutions, and communities show how much they value older adults by affording opportunities for visibility and recognition of contributions large and small.

The unique framework that comprises the AFE aligns with these descriptions. Using the Age-Friendly Health Systems framework (the 4Ms: What Matters, Medication, Mobility, Mentation) as an example, its alignment with the shared characteristics found in the AFE becomes evident. “What Matters” matches the shared characteristics “Respectful” and “Responsive,” while Mobility and Medication and Mentation align with the shared characteristics “Active,” “Equitable,” and “Healthful.”

The systematic effort to engage leaders from across age-friendly sectors to develop ways of describing a cross sector AFE is potentially applicable in the DF movement. An approach that creates solutions in a collaborative fashion could accelerate improved services and outcomes for PLWD.

What is a Dementia-Friendly Health System?

Age- and Dementia-Friendly ecosystems are similar. While they stem from two separate movements, integrating Age- and Dementia-Friendly principles will improve clinical outcomes and quality of life for older adults, save resources, avoid confusion, reduce duplicative efforts, and allow each movement to strengthen and support one another (Massachusetts Age- and Dementia-Friendly Integration Toolkit, 2019). The DF movement was created to ensure PLWD and their care partners are supported in their communities, by local government, with legal advice and social support systems, and throughout the healthcare system.

One of Dementia Friendly America’s (DFA) 11 sectors is healthcare (Dementia Friendly America, 2015). DFA recommends preparing for, learning from, and responding to older adults who are living with a cognitive challenge. All healthcare settings should plan and make sure that PLWD are welcome and their needs are integrated into all aspects of care. Comprehensive dementia care and support includes screening, cognitive assessments, explanation, and support around diagnosis and throughout the journey, as well as developing and implementing a person-centered care plan with the PLWD and care partners (Dementia Friendly America, 2015).

Two evidence-based examples of this work include: UCLA’s Alzheimer’s and Dementia Care Program, and the Benjamin Rose Institute on Aging’s SHARE for Dementia program. Both programs incorporate DFA recommendations, ensuring that the PLWD and their care partner(s) are engaged and involved (Reuben et al., 2013; Benjamin Rose Institute on Aging, 2022).

An Age-Friendly health system identifies care and support for PLWD by guiding each health setting to screen and assess for dementia at a standard frequency, document and act on that assessment, and determine who will be primarily responsible to lead each aspect of the work (What is an Age-Friendly Health System? 2022). One of the four evidence-based Ms (the 4Ms) of an age-friendly health system is Mentation, which includes preventing, identifying, treating, and managing dementia, depression, and delirium across settings of care. The 4Ms of an age-friendly health system follow an essential set of evidence-based practices, cause no harm, and align with “What Matters” to the older adult and their family or other care partners (What is an Age-Friendly Health System? 2022).

Too often, agency and autonomy are taken away from PLWD. Using the principles of Age-Friendly Health Systems, such as focusing on “What Matters,” in every care setting and community to support persons living with dementia will encourage respectful, person-centered care.

The Unseen Care Force: Unpaid and Family Care Partners

The largest group of people caring for PLWD is primarily family and other care partners in the community (Alzheimer's Association, 2022). Many of those individuals (often unpaid) provide a variety of support, such as transportation to and from medical appointments and the grocery store or pharmacy, assist with activities of daily living and other personal care, help manage banking, housing, and/or other social determinants of health.

As dementia progresses and PLWD are less able to care for themselves without assistance, the burden on care partners increases (Chiao, Wu, & Hsiao, 2015). Many care partners find they have to make difficult choices about how to spend their time and money: on their health and well-being, on their family’s needs, or on the needs of the PLWD. Some government programs, such as Medicaid or the Administration for Community Living’s (ACL) Family Caregiver Support Program may compensate care partners for certain activities. However, many older adults do not qualify for that assistance yet are too poor to pay for the care and support they need. This may lead to unsafe conditions and increased risk of adverse events such as falls and medication errors for PLWD who live alone or with minimal support at home.

Few programs exist to address the mental and behavioral health needs of family and other community-based care partners, many of whom are also older adults with their own health and/or financial challenges (Riffin, Van Ness, Wolff, & Fried, 2019). This gap in services and support for both subpopulations, PLWD and their care partners, affects entire communities. The population of older adults requiring services, particularly those living with dementia, is increasing rapidly and the population of people turning age 21 (potential care workers), is steadily decreasing (PHI, 2021). As more nursing homes close or become focused on post-acute care, a system of support in communities must be created that addresses the needs of PLWD and their care partners. Also, investment in the pipeline of people interested in becoming care partners for PLWD across the ecosystem is crucial.

Case Study

Elena Jiminez, an 86-year-old widow, is diagnosed with advanced dementia of the Alzheimer's type and is experiencing her fourth bout of aspiration pneumonia within a few months. She has lost weight and is no longer able to walk without the assistance of two people.

Jiminez lives on her Social Security benefit and does not qualify for Medicaid, which means she is ineligible for many programs and services in the community. The local Area Agency on Aging (AAA) has adopted the principles of Age-Friendly and Dementia-Friendly Health Systems and Communities. It applies the 4Ms to each episode of care with each older adult and each team member.

After evaluation by the (AAA) care manager and a home health nurse practitioner, the team and her family conclude that Jiminez is “actively dying,” meaning she is in the final stage of life just before death (All American Hospice, 2022). They discuss Jimenez's previously stated goals and wishes (What Matters to her, her preference to die at home and not be transferred back to the hospital), the designated healthcare agent (her daughter), and the option of an in-home hospice model of care.

In addition to What Matters described above, the team goes through each of the other Ms with the family. They discontinue Medications that are no longer needed and provide the family with other medications and interventions to treat delirium (Mentation) if needed. They promote Mobility through assisted range of motion and a schedule for turning and positioning her. They talk about using music and good memories as therapeutic interventions during this phase of Jiminez’s life.

Jiminez dies three days later at home.

The 4Ms framework helped the team to make decisions for this person living with dementia and with her family care partners based upon objective and subjective criteria, evidence-based protocols and tools, and direct engagement with Jiminez (through advance care planning and What Matters) and her designated care partners.

Training of Health Professionals in Dementia Care and Support

Fortunately, there are now a growing number of excellent team-based educational training materials that can guide health professionals as they care for these individuals and help support their families and extended care systems. Across the past five years, more than 500 peer-reviewed papers have been added to PubMed that cover dementia care guidelines, when previously there were few. This speaks to the growing body of research and the subsequent publications now available.

Some guidelines conflate palliative care with dementia care and it is critical to distinguish between the two. PLWD may live productive and engaged lives even in the context of memory and functional loss. Palliative care services may be needed for symptom management, such as in the case of pain management. The growing trend is to focus on the primary care clinician as the provider who is most likely to observe patients with possible dementia first and may be the only clinician involved in making the diagnosis. In urban medical centers, it is more common to engage neurologists, psychiatrists, and geriatricians where they exist. (Galvin & Sadowsky, 2012).

The Global Brain Health Initiative (GBHI) under the direction of Sarah Lock at AARP has done much to encourage healthy brain behaviors that may limit or slow the trajectory of dementia and therefore push off years of active disease (Mintzer et al., 2019). These include understanding the relationship between brain health and mental well-being as well as recognizing the brain-body connection and the role of physical exercise and purposeful activities. Further cognitive stimulating activities, adequate sleep, and social connectedness are all related to maintaining brain health for as long as possible.

The clinical team, upon careful assessment, can help create a care plan that is responsive to what PLWD and their care partners believe will be effective. In 2020, the Milken Institute launched a remarkable Alliance to Improve Dementia Care, which has rapidly convened a large coalition to serve as a collective voice to policymakers in Washington, DC.

Of the many reports it has released, one that is central to caregiving is called Scaling Comprehensive Dementia Care Models (Super, Ahuja, & McDermott, 2021). This comprehensive report and focuses on two themes: 1. developing a structured framework to test, implement, and scale comprehensive dementia care models; and 2. implementing effective payment policies to incentivize adoption and participation in comprehensive dementia care models. The report provides an excellent approach that should be used by teams providing care to PLWD.

The Age Friendly Health System social movement is doing much to ensure that every older person receives cognitive screening appropriate to their clinical setting via rigorous evidence-based guidelines (Mate et al., 2021). Through 4Ms care, an evaluation of mentation is one of the four essential elements.

Multicultural and Multilingual Disparities in Dementia and Caregiving

One systematic review conducted in 2022 demonstrated that collaborative care models and multicomponent interventions improve care partner burden and depression for diverse PLWD and improve quality of life (Demanes, Ward, Wang, & Hess, 2022). These models and interventions also decrease the use of emergency departments, hospitalizations, and nursing home placement. The study also noted that there is very little known about multicultural populations in rural communities, as well as for communities with extremely low resources, which is an area that should be studied.

Another study conducted in Australia enrolled four communities including those from Arabic-, Chinese-, Italian-, and Spanish-speaking communities. Several themes emerged from the study. The first related to cultural and familial norms that emphasize keeping dementia care in the family instead of letting outside care partners take over the role. Families were afraid of being judged by community members and women were identified as the predominant care partners, with adult children as the main care partners. The role of spousal care partners was also underscored as a significant part of the caregiving structure. In summary, this study documented that workers from differing cultures who are part of the same community as the PLWD and their family tend to have the most beneficial relationship with them (Boughtwood et al., 2011). Dementia care programs that address the multicultural and multilingual needs of diverse populations do much to improve quality of life and reduce unwarranted clinical interventions.

State and Federal Policy Overview and Gaps

In 2018, Massachusetts passed “An Act Relative to Alzheimer’s and Related Dementias in the Commonwealth.” This law requires hospitals in the state to create an operational plan for the recognition and management of PLWD. Additionally, Massachusetts created a State Plan on Alzheimer’s Disease and Related Dementias to recommend tailored state policies that create infrastructure for PLWD and their families/care partners (Massachusetts State Plan on Alzheimer’s Disease and Related Dementias, 2018). This is one state-level example of the needs of PLWD being specifically addressed in healthcare settings, communities, and state government.

At the federal level, there have been several advances in addressing cognitive challenges from a policy perspective. Research funding has increased; but most of it focuses on Alzheimer’s Disease and not necessarily on other conditions that may result in various types of dementia. In 2022, the National Institutes of Health (NIH) secured a $289 million increase for Alzheimer’s and dementia research funding (Alzheimer's Association, 2022).

Related to caregiving, the last federal law was passed in 2018: Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. This act focused on “the needs of our nation’s family caregivers through the development and implementation of a coordinated national strategy” (Alzheimer's Association, 2022). In the 2021 Federal Policy Priorities for the Direct Care Workforce, the need for training to build dementia care competence among direct care workers was highlighted as well as necessary funding (Campbell, Del Rio Drake, Espinoza, & Scales, 2021). While this and other national directives are vital, individual states need to bolster their care partner infrastructure, support, and resource dissemination.

Conclusion

There has been enormous progress in the field of dementia prevention and care, which has been primarily directed at PLWD and their families. Given the demographics and the opportunity to destigmatize dementia, in our view a truly dementia-friendly world means that all people, especially those who are providing care, should be familiar with dementia and related disorders. Shame and embarrassment is still expressed by those experiencing cognitive loss. The opportunity is now, to disseminate the information in a way that encourages acceptance, caring and competence in this vital area of care. The principles of age-friendly health systems and dementia-friendly care are readily available for adoption in all settings across the ecosystem and curricula should be enhanced in all the places where the public receives information and education.

Alice Bonner, PhD, RN, FAAN, is senior advisor for aging at the Institute for Healthcare Improvement (IHI) in Boston, Massachusetts, chair of Moving Forward: Nursing Home Quality Coalition in Washington, DC, and adjunct faculty at the Johns Hopkins School of Nursing in Baltimore, Maryland. Amy Walsh, MS, is program manager for Age- and Dementia-Friendly Health Systems at the Institute for Healthcare Improvement. Jody Shue, MPH, most recently served as executive director of the Age-Friendly Institute in Waltham, Massachusetts, and prior to that was director of Age-Friendly Rhode Island, a statewide advocacy and engagement initiative based at Rhode Island College. Shue teaches healthcare finance at Boston University School of Public Health. Grace Morton is an MPH candidate at Columbia University’s Mailman School of Public Health in New York City. Terry Fulmer, PhD, RN, FAAN, is president of The John A Hartford Foundation in New York City. She is an elected member of the National Academy of Medicine and served on the independent Coronavirus Commission for Safety and Quality in Nursing Homes established to advise the Centers for Medicare and Medicaid Services.

Photo credit: oneinchpunch/Shutterstock

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